New stuff . . .

I’ve been slow in updating. Part of that is because we’ve been so busy! Part is because, honestly, we’ve been digesting.

As you know, Parker had a sleep study done a few months ago. Per the sleep study, his ENT wanted us to discuss the possibility of placing on CPAP breathing support at night.

Another issue re-surfaced after the sleep study. Most of you will need a little back story on this one: when Parker was about 4 or 5 months old he started having these spells. From the beginning they were obviously triggered by a couple of things: he was mad, hurt, or scared. If we were out of his sight for too long, or his brothers took a toy away, or he fell and hurt himself, these were all sure triggers. The spells are scary. Essentially, he passes out and as soon as his body loses consciousness he finally starts breathing again.

We talked to every doctor we know and described the episodes in detail. Everyone independently assured us that our feisty redhead was holding his breath and that he would outgrow it and our job was to try to avoid the episodes and also avoid collatoral injury if one were to happen.

I never bought it. Those who see me often know that I never, ever felt that was what was happening but despite many late nights on the internet researching I also never came up with a plausible (in my mind) alternative.

Finally, after two years, Parker had two episodes in the recovery room after his hernia repair. He was wearing an O2 monitor and each time his levels dipped into the 40s. The nurse calmly assured me that that was NOT breathholding. I went home and hit the internet again. This time I found an article that resonated. I was certain that what this article described was exactly what was happening to Parker. I passed the article to his ENT team at Cincinnati and they agreed to refer him to Dr. Robert Wood.

In Cincinnati CPAP is managed by the pulmonolgy department. That turned out to be our lucky break. We were going to need to see pulm anyway for CPAP so we got referred to Dr. Wood who is the head of the department. He runs a world class and award winning department just as Dr. Cotton does for the ENT department.

A week ago we saw Dr. Wood. I braced for an appointment where we talked a lot about Parker’s airway history and a lot about CPAP and if I was lucky I might get 3 minutes to say my thoughts on these spells. I couldn’t have been more wrong.

To make an already long story a little shorter, the bottom line was that after lengthy discussions, Dr. Wood agreed that what was happening with Parker was not likely typical breathholding and very likely what was described in the article. He believes that Parker is having an abnormally strong emotional reaction to some stimuli and they are causing an anxiety attack of sorts that renders him unable to breathe temporarily. Further, he is concerned that these attacks have the potential to be very, very dangerous. There is the obvious concern that he will hurt himself falling (he’d fallen down the stairs just a few days before our appointment). Second, Dr. Wood feels there is a possibility that one of the episodes could cause a cardiac arrythmia that could be hard to recover from.

End result was that Parker is currently trialing a medication called clonidine. The drug is used for a myriad of things – lowering blood pressure, meth detox, ADHD, brain injury, among other things. It also acts as a mild sedative or anti-anxiety drug. The article (actually a research article) showed some significant promise in limiting or eliminating the episodes with the drug.

Parker has been on clonidine for a week. He slept for most of the first 5 days but yesterday and today he is mostly back to his normal self. He has not yet had an episode since we put him on the drug. That is good but I don’t count those first 5 days. So, the jury is still out as far as I am concerned but things look promising.

If you are still with me. Wow. There is more.

That was a Thursday. On Friday we went into the OR together with Drs. Wood and Cotton. In looking at Parker’s airway and reviewing the results of the sleep study it was decided that Parker’s apnea is not severe enough to warrent CPAP. In fact, with the exception of tonsils that will eventually probably have to come out, his airway is looking really, really good.

Then the other shoe dropped. Dr. Wood said that there were several concerning events during the sleep study. Several times during the night Parker desat into the low 80s or low 70s for no apparent reason. They weren’t associated with an apnea or really anything else that they could tell from the sleep study. His average sat during the night was 94. That didn’t phase me, because that was pretty typical during his time that he was trached. Dr. Wood wasn’t impressed. In fact, he didn’t like it.

The conclusion was that there is something else. Whatever it is is not airway related. Next stop: lungs and heart.

We are going back in three weeks for a high res chest CT scan and an echo cardiogram. We will also meet Dr. Wood again in pulm clinic to discuss our clonidine trial.

We have no idea what the future will bring. For now, we remain thankful for the fact that Parker in many ways is a very typical little boy. He knows his letters and shapes and is learning to ride a bike. He learns new words each day, though his favorites remain NO and WHY.

Our journey continues . . .

4 Responses to “New stuff . . .”

  1. 1 Jill Milburn July 3, 2009 at 2:20 am

    Hey. Thanks for the updates. We are always thinking of you guys. If you need a place to stay in Cincinnati my parents house is always available…and close to Graeters 🙂

  2. 2 Happy July 6, 2009 at 3:20 am

    Hey there! Thanks for keeping us posted. I’m thinking of you and praying for you! If you’re going to be around your parents this summer and have any openings in the social calendar, I’d love to see you! Have your mom let my mom know…I don’t have internet in the summer! Hope they get everything figured out on Parker…if they figure out the “why’s” and “no’s” let me know…I need those figured out too!!!

  3. 3 Angela July 10, 2009 at 6:52 am

    Wow is not the word.. I have never met anyone who just keeps going and going like you guys, it is one things after another and once you guys think okay we’re good something else hits.. Keep up your spirits and we’re thinking of all of you.

    Keep us posted and next time your in town let us know.

  4. 4 Sarah Nowell July 19, 2009 at 6:11 pm

    Thanks for the updates. I think of you guys often and admire your strength. Keeping you in my thoughts and prayers. Any time you are coming to the DC area , please let me know! I miss you guys! Love, Sarah

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